Sometimes I think every day of my life is like a trip to the fair. I am sifting my children through knots of people, sounds, smells, and brightly lit distractions as we are on our way to some specific place we haven’t quite figured out yet. We are determined to have fun, but we are exhausted just trying to hold on to each other. Vendors call out and I try to say, “No, no…just keep moving,” but all those other knees bumping against us move us that way anyway. When it starts to get dark, my husband finds us and hands me a pile of tickets, telling me with his eyes that the effort of getting them required too much. I know that he’ll do it again the next day, so that we can all keep eating and climbing on the rides—-rides which are over much too quickly and feel suspiciously precarious. Together, my husband and I try to navigate the children to a bench…someplace where for just a moment we can eat something unplanned and quick and look at each other and say a few things a little too loudly, trying to be heard over a thousand other noises.
But there are moments of clarity: suspended at the top of the Ferris wheel holding hands; savoring the sweetness of honey and cinnamon and soft, hot bread; the sound of my children’s laughter cutting through every other sound; gasps at the stall of a magnificently gargantuan pig; the silent pocket (like parentheses) when I call my daughter’s name and she doesn’t answer. She leans against a door, suddenly unable to hold her own weight. I see distance in her eyes, and I call to her, imploring her to look at me. She tries, but her eyes flick away like the pendulum of a ticking clock. It happens quickly, but it feels like forever. Another adult (one of her teachers, actually) helps me move her to a chair where her eyes lock in a blank stare and her lips begin to turn blue. As I begin fumbling with my phone, I notice tiny bubbles gathering in the corners of her mouth, where her lips are hanging open.
It takes too long. Too many moments when I am calling to her and she doesn’t answer. There is no change in her face. I am talking to her doctor, my eyes focused on her chest, memorizing the rise and fall. Another teacher takes her pulse. A friend calls 911. As if slowly coming unfrozen, just before the paramedics are called, my daughter begins to blink. She seems unable to speak, but slowly turns her head to look at the teacher standing behind her. Then she nods. And finally, finally when someone says her name she crinkles her forehead and says, “Huh?”
Oh wait. You thought we were at the fair. Yea, I did too. But then my daughter had a seizure. And, well, everything else just stopped.
It was a moment of the worst possible clarity. Nothing mattered apart from seeing recognition in her eyes, hearing her voice, seeing her able to smile—even if one corner of her mouth drooped like an odd comma, badly placed.
She’d had another seizure two years ago, but we weren’t positive then it was actually a seizure. At the time, her teachers thought so, but the physician’s assistant we saw that day thought maybe it was actually only a rare side effect to an undiagnosed case of strep throat. I remember the uneven, unsettling smile, though. When I picked her up from school two years ago and took her to the doctor’s office, that lopsided grin was the last evidence to disappear. This time, we were actually hosting a thank-you luncheon for all of our teachers with some friends who have shared many of the same teachers. The kids were serving the food. Just as we were about to send Riley around to ask about dessert, she collapsed against the wall. And you know what happened after that.
I consider it “a God thing” that our teachers were there when it happened—so many amazingly talented educators who know and love our kids. They helped me get her to a chair, prodded me into action when my mind perseverated on what’s happening what do I do what’s happening what do I do, told me about how it mirrored what they’d seen two years ago, took her pulse, put their hands on her shoulders, and surrounded us. When we left for our pediatrician’s office, two of Riley’s teachers went with me, talking to her in the back seat, watching her face. I did not have to ask if my good friend would stay with my other two children while we went. I knew she would. But on my way out the door, I paused. Adam hadn’t eaten lunch. My friend did not have enough practice with his diabetes to know how to calculate a shot for him. I said this, quickly, and Adam’s teacher lifted a hand. “I’ve got that!” She stayed a couple of hours to see him through lunch and insulin. Other teachers stayed behind until the last dish was put away and everything was clean.
Our pediatrician is one of our best friends, and after he saw us and sent us on to the ER for a CT scan, his children suddenly appeared in his office. His wife, who is my best sister-friend, dropped them off with a nod to his nurse and then told the receptionist at the desk in the ER that she was going to sit with us, even though the receptionist had refused to let our teachers walk through the double doors into triage. She helped me change Riley into hospital scrubs and clean her up after Riley became sick, the splitting headache that followed the seizure melting away into nausea. I sent off texts to three or four friends to ask them to pray. Kevin left work and went home. Zoe was pretty shaken up by what she’d seen and needed her dad. Four of my closest friends, with whom I’d been set to have coffee that evening, came to the ER waiting room and waited and prayed until we emerged sometime in the early evening. The CT scan was clear. Early the next morning, our neurologist told me he felt that Riley had indeed suffered a seizure followed by a migraine headache, and that it was very likely that she’d suffered with migraines for sometime. In my mind, I flipped through memories of headaches, thinking about how Riley rarely complains of pain unless it’s significant. Then I thought about how she’d sometimes sleep for an hour or more in the middle of the day—but only when she’d had one of those headaches. Why had the word migraine never entered my thoughts before he said it?
In the weeks since that one, my daughter has had an EEG and an MRI. I wondered how she would manage those, especially the MRI. Riley has always had hypersensitive hearing. She can tell you when a bee is within a hundred yards and used to scream blood-curdling screams over buzzing insects before we caught sight of them. At three, she wept and tightly clapped her hands against her head when we walked on the beach or when everyone sang in the corporate assembly at church. Now, she is poised and articulate and calm about her fears. One day recently, she told me that she needed ear plugs for school. “It’s too loud in the cafeteria, Mom. I don’t like all that loud talking.” But I wondered if the MRI would traumatize her with all of it’s cacophonous humming. I prepared her with a series of conversations about the noise. I prayed. I told the technicians about her hearing sensitivity. They gave her earplugs and headphones, and she lay still and composed the entire half hour or more, responding every time they asked her a question. I wonder if they even knew she has autism. I can hardly believe that at 3 she had no words and used to line her toys up in rows and wake up at 3 am…2am…1am…every night, restless and unable to sleep. Now she walks into doctor’s offices for tests and follows directions, carries on conversations, stays calm and in control despite her anxiety—things perhaps parents of neurotypical children sometimes take for granted. But I don’t. I remember. And God is in the difference.
Last Tuesday morning, our neurologist diagnosed Riley with epilepsy, which is actually a “spectrum,” a term that applies to number of different seizure disorders. Apparently every child with epilepsy is just as different as every child with autism and every other child—with unnamed challenges. I joked with one friend and told her that I guess this makes us a double rainbow.
Apparently, the right hemisphere of Riley’s brain “sparks” constantly. Even during the EEG, she’d had a brief seizure which appeared visibly as just a pull of her eyes to the left side. I was sitting in the room with her and had no idea. Our neurologist believes that she probably has hundreds of these absence seizures that go undetected. And the thing which actually made one of my good AU parent friends laugh out loud (because she knows all too well) is that even if I had noticed the visible signs, I’d have chalked them up to autism’s eccentricities. So, we’re about a week into some medication, slowly building the dose. And we have an appointment for an evaluation with a neuropsychologist, with the hope that maybe she can help us figure out how many of Riley’s issues with focusing and cognitive processing have to do with epilepsy and which ones may be attributed to autism. It feels like a long and winding road, and as usual, I’m not exactly sure where it leads. My prayer is that it leads to some positive outcomes for Riley, who did relatively well academically last year, in spite of the seizures.
I bought some books about epilepsy and growing up with epilepsy so that I can begin to wrap my mind around this new path. There’s so much uncertainty—whether the meds will work, if there will be side-effects, what epilepsy means long-term. But in the midst of all that emotionally-depleting, prayerful wondering, I’ve found some pretty significant clarity. You know. Things like this remind us, painfully but clearly, that the present moment is the only guaranteed moment we have together. I am more present than I have ever been in the present moment. Lately I listen more closely when my children speak to me. I really look at them while we are doing ordinary, every day things. I am trying, sometimes not very successfully, to slow down and remember that being together is so much more important than all the doing I can squeeze into a day. I am trying not to live every day like I’m at the fair. But when it feels like I just can’t leave the crowds and the frantic pace, I am trying to appreciate the moment we’re in together for what it is. And it is clearer than ever to me that I need every single one of those dear friends—who are all really more like family to me. On the roughest roads, they are such unwavering support. There aren’t words for how much I appreciate all the loving people in my life. I want to offer them my love and strength when they need it most, just like they do for me.
But clarity like this doesn’t last. I always think it will. I think I will be changed forever by the clarity I feel, and in tiny ways, maybe I am. But I get sucked back into the chaos, ruled by all the stuff I have to do, and I forget. But I don’t want to forget. I am praying not to forget. When my children look back on childhood, I don’t want them to feel my tight grip on their wrists and hear an exhausted voice saying, “No, no, keep moving.” I want them to see my smile and feel me squeeze their shoulders as we whirl through the night sky together.